The Cottages Blog

The Unique Journey of the Dementia Caregiver

Posted by Kendra Newton on Dec 26, 2015 11:00:00 AM

The Unique Journey of the Dementia Caregiver

You want the most compassionate Alzheimer’s care for Mom that you can find, so you’ve taken on the commitment yourself. You’re steeling yourself for the inevitable emotional ups and downs, the moment-to-moment behavioral changes, and the certain disruptions to your everyday life. Many people will offer you advice, but it’s up to you to sift through the opinions of others to carve your own caregiving path through this challenging time.

The most important advice we can offer as your loved one passes through the progressive stages of dementia is: be compassionate with yourself. Self-care is a top priority—you have to be healthy for two. Educate yourself on what you may encounter as your mother’s condition worsens, know your limits, and ask for help before you reach a breaking point.

Early-Stage Caregiving

Shortly after Mom’s diagnosis, and perhaps for many years following, she might be able to live quite independently—cooking her own meals, driving herself to errands or appointments, and maintaining social ties and commitments. Many people may not even realize that she has dementia.

Your most important role during this phase is to help Mom plan for her future.

  • Review all the necessary legal and financial considerations together so she can make her wishes known now.
  • Determine her health care preferences, and review the long-term care options.
  • Ensure that Mom's will is in order, and if you have power of attorney, designate a successor in case you are unable to perform that function when the time comes.
  • Help your mother tell friends and family about her diagnosis.

As more symptoms begin to show, support Mom's independence by implementing systems that help her stay organized and on top of important activities such as taking medications and managing her money. Touch base with her daily, and be sure her home is safe and easy to maintain. Enlist a part-time housekeeper or a driver for her shopping trips. Seek out support groups for both of you. Finding a community at this early stage helps prevent the isolation and loneliness that often develop in later stages as you care for Mom.

Middle-Stage Caregiving

It will be harder now for Mom to function independently. She will rely on you for help with daily basics, including eating, grooming, and dressing. She will be unable to drive, so arranging transportation will fall to you. If it is unsafe for your parent to live alone, you may consider moving her in with you or looking into a residential care facility.  

Mom’s emotions will intensify in the middle stages. She may become irritable, uncharacteristically aggressive, depressed, or anxious. Many people with Alzheimer’s exhibit restless and repetitive behaviors, and approximately 60 percent wander, becoming disoriented and confused even in familiar surroundings. Communication is severely impaired in the middle stages of dementia, and Mom will likely have a hard time choosing her words, expressing herself, and understanding your speech. She will probably repeat herself often. Speak slowly, gently, and try to be as patient as possible. Remind yourself that it is the damage from the disease causing your mother’s difficult behaviors and inability to communicate, not any failure on her part.

Late-Stage Caregiving

Mom may pass through the final stages of Alzheimer’s for weeks or years. She will probably need around-the-clock care as she can no longer eat, swallow, and walk without assistance. This loss of independence and dignity will be hard for you to witness. Even though her ability to communicate with you verbally is impaired, you can still connect and offer support through gentle touch and stimulating her other senses with her favorite music, art, photos, and foods.

Because you have discussed end-of-life care for Mom in the early stage of Alzheimer’s, you are confident that her final days are as peaceful as possible. Remember to tend to your own well-being so that you can ensure that Mom receives the highest quality of life possible, for as long as possible.

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Topics: Advice for Caregivers

Kendra Newton

Written by: Kendra Newton

Kendra has several years of experience working in admissions. She loves working with families to plan and care for their loved ones. Married to her husband, Joey, for over 20 years, they have two children, Taylor and Kaylee. Kendra enjoys cooking, reading, swimming, and watching old classics.